Are we listening? Using the consumer voice to improve service provision for younger people with dementia
author
Dr Adrienne Withall, PhD, Research Fellow, University of New South Wales, Australia
With A/Prof Victoria Traynor.
abstract
This workshop shares the findings of a recent paper considering the views of people with younger onset dementia, their families and their health professionals.
Aim: To compare the views of people with younger onset dementia (YOD; onset <65 years) and their carers versus health professionals regarding the experience of YOD and key issues in service provision. Method: This qualitative study was conducted as part of a Australian government-funded project.The data was generated from 8 group interviews with younger people with dementia (n=24) and their care partners (n=33) and 8 group interviews with health professionals (n=50), across four states (ACT, NSW, SA and VIC). Line-by-line constant comparison was used to identify themes regarding how best to provide services and training in YOD. Results: Health professionals hold a much more nihilistic view of YOD than their clients. Consumers expressed their need for public awareness building to fight stigma, education for general practitioners, involvement in decision making, flexible and personalised services, and support for children. The needs of staff included education about clinical aspects and BPSD, help maintaining boundaries and mentoring/debriefing. Conclusions: Education is key in reducing the stigma that dementia is an illness of the aged and frail. The needs of health professionals working with YOD also need to be addressed and they can learn from these positive patient experiences to provide more effective care.
about the presenter
Dr Adrienne Withall is a Senior Lecturer within the School of Public Health and Community Medicine at the University of New South Wales and is also a clinician within the Academic Department for Old Age Psychiatry at the Prince of Wales Hospital. With Professor Brian Draper, she is leading a team examining the prevalence of younger onset dementia in NSW, the needs of this group, and determining a model of optimal service provision and care. The INSPIRED Study was awarded an NHMRC grant for 2011-2013 and will be the largest international study of younger onset dementia. Her other interests include alcohol related dementia and successful ageing.
Younger people with dementia: the challenges, the lesson and meeting their needs.
author
Danielle McIntosh, BAppSc(OT), MHlthServMgt , Cert IV Assessment and Workplace Training, Dementia Consultant; Publications Manager, HammondCare, Australia
Abstract
[Coming soon]
about the presenter
Danielle McIntosh is a Consultant with the Dementia Centre (Australia). Danielle is also a key member of the HammondPress production team. Her particular interest is in the areas of life engagement, younger onset dementia and environmental design.
She sees her work as providing an opportunity to improve the quality of life of people with dementia, to provide support and guidance to carers of people with dementia and to work with highly knowledgeable and internationally recognized experts in the area of dementia care.
Danielle hopes to see a wider understanding that “activities” are seen less as recreational, and more about providing balance and a variety of opportunities to engage in activities which provide a sense of self, meaning and value to the person
Younger people with dementia: understanding the story of survival
author
Associate Professor Victoria Traynor, Associate Professor (Rehabilitation, Continuing and Aged Care) and Associate Director of the NSW/ACT Dementia Training Study Centre, University of Wollongong, Australia
PhD ( University of Edinburgh), BSc (Nursing Studies) Hons, RGN, PGCHE, ILM
Abstract
[Coming soon]
about the presenter
Associate Professor Traynor is the Associate Director of the newly established NSW & ACT Australia Dementia Training and Study Centre. This Centre is funded by the of Department of Health & Ageing, and complements aged and dementia care research activities which Associate Professor Traynor is leading with industry and academic partners across Australia.
She is also the programme lead for multi-disciplinary postgraduate studies in aged and dementia care consisting of the Graduate Certificates and Masters of Science in Gerontology & Rehabilitation Studies and Dementia Care. Associate Professor Traynor is the course coordinator for the Dementia Care courses. Her background is a combination of research, education, and clinical experience in aged and dementia care. The focus of her work has been on improving dementia care services using qualitative research approaches and practice development approaches. Previous positions held were with the University of Nottingham, the RCN Institute Gerontological Programme, Oxford Brookes university, and as the Gardner Scholar in the Department of Nursing at the University of Edinburgh.